Friday, August 28, 2009

There are several topics I've been wanting to blog about, but I haven't had 5 minutes to sit at the computer! No time to read blogs lately either - I'll just have to catch up when the kids go back to school next week.

My kids packed an enormous amount of fun into this last week of summer, and I am hugely grateful that they were well enough to enjoy it all!

On Monday, my friend Amy bravely accompanied 5 boys to Dorney Park, a local amusement park. They were gone from 8 am until 11 pm. I really appreciated what Amy did because a day like that is way beyond my capabilities, and the kids all had a blast riding roller coasters and water slides all day.

Jamie and Craig were a little tired on Tuesday but really not too bad, considering all they had done the day before. They took it easy most of the day, and Craig and I went to buy his school supplies.On Wednesday, we made our annual trip to a local state park to play in the creek. Amy and her son came along, as well as another friend, Marti, and her kids, plus my boys and another friend. This to me is the quintessential summer day - we walked up the creek, swam in the pools, the boys caught crawfish, slid down a muddy bank, and (being boys) threw wet t-shirts and mud balls at each other! They had a great time, and I got to enjoy the cool creek and chat for hours with my two closest friends. We got back to the house in time for me to grab a quick nap before Craig's meet-the-teacher night.

Then, yesterday, Jamie had a belated birthday party. We had 8 boys here - I took them to the park, where they played football, soccer, and ultimate frisbee, then to the pool to cool off, then back here to the house for a sleep-over. They were up until 2:30 am (quite a feat for my boys who normally go to bed at 8:30!!), and I made a big batch of pancakes this morning.

Can you believe that two kids with CFS did all this in one week? (not to mention Mom!) I am amazed and so grateful that they can do all this now. Thank goodness for Florinef - we consider it a miracle drug here. And it's just so nice in the summer to let the kids do all this stuff without worrying about school absences and make-up work.

And guess what we're doing this weekend? NOTHING! That's why we planned the sleepover for Thursday and not Saturday - now the boys have several days to just rest and recover before school starts (Monday for Craig and Wednesday for Jamie). I'm looking forward to reading and watching DVDs this weekend!

It's been a great summer - so much better than last year (i.e. The Year of Lyme). Hope yours was as good as ours!

Friday, August 21, 2009

We're back from our camping trip in NY. It was a hectic schedule, but we had a lot of fun. We spent the weekend at a lake with my extended family. It was, of course, tiring for me to be with a crowd of 14 people for two days, but it was good to see everyone. And it's so great to see the kids running around with their cousins, having a blast. They never wanted to leave!

Next, we went into Rochester to visit my Dad and his wife for a day. Great to see them, as always, but I was pretty sick while we were there. I must have picked up a little stomach bug (my husband and Mom, too), plus I was worn out from the big weekend. I always feel bad when I have to spend most of my visit in bed, but the extra rest revived me.

We spent our last couple of days in the Finger Lakes region, just the four of us. I had wanted to show my kids one of my favorite areas, and we all enjoyed the gorges, waterfalls, and lakes. One of my oldest and closest friends came to the campground to visit us, which was wonderful. We had hoped to escape the Delaware heat and humidity for a typical cool NY summer week, but it turned out to be their hottest and most humid week of the summer! Still, we had fun and enjoyed the trip.

Now, back to the lengthy to-do list! The kids start school in 10 days (good thing - I'm so behind with work!!). And another task just got added to my list - I discovered today that two of my medications contain lactose (lots of meds use it as filler), so I need to try to find some replacements. We also have a hectic weekend ahead, trying to trade in our old truck before Cash for Clunkers ends on Monday! Even so, it's good to be home again.

Tuesday, August 11, 2009

I started to feel more like myself again Monday morning and continued to do well today. I don't know if it was that day of rest (why did I wait so long to do that??) or if the mild crash I was having just finally ran its course. In any case, the wonderful support and advice from all of you helped very much! Everything you said was so true. I am trying to take better care of myself and not let stress get to me.

Stress and CFS have such a cyclical effect on each other; it's hard to tell sometimes which one is causing the other. When I'm crashed, I'm more prone to feel stressed and anxious - I've learned from long experience that emotions and physical symptoms are inextricably linked. There are changes in my brain chemistry when my CFS symptoms flare that lead to increased feelings of anxiety and depression.

And, of course, feeling stressed causes CFS symptoms to increase. The research on that point is very clear - those of us with CFS do not respond to stress the way healthy people do. Because of endocrine dysfunction, our bodies don't make the right hormones in the right amounts when faced with any kind of stress. And, of course, there's simply the stress of not feeling well and not being able to do what you need to do. So, CFS causes stress and stress causes CFS - it's a tough cycle to break once you get mired in it.

So, I was very relieved on Monday to feel more like myself again. The boys and I finally cleaned out their closets - productivity feels so good! We have boxes of old toys to donate to charity, Craig can now fit his shirts in his closet (what a concept - clothes in a closet!), and we also had our 1994 Pathfinder towed to the shop to be fixed in preparation for a possible Clunkers trade-in. There's nothing like finally taking care of long-overdue tasks to make you feel good!

The boys had a double sleep-over last night, so I was glad to feel well enough today to make the four boys a big breakfast and drive them to the pool. And, while they were there, I got some work done that had also sat idly last week. Now, I'm finally able to turn my attention to getting ready for our family camping trip this week. And I'm looking forward to it, too!

Sunday, August 09, 2009

I have been really out of sorts this week and seem to be getting worse instead of better. I thought that maybe writing about it would help. I haven't been fully crashed but have been low on energy and motivation all week - hovering in that gray area of CFS where I don't feel good but I don't feel horrible either. But I feel so down and tired all the time. I'm having trouble falling asleep and I wake up still feeling tired (I know, typical for CFS but usually my medication makes my sleep feel normal). I somehow push myself to get a few things done during the morning, waiting until it's nap time so I can get into bed again. I feel groggy and tired in the afternoon, somehow manage to get dinner ready, then often feel a little better in the evening...then the whole thing starts all over again. Over all of this is a feeling of vague dissatisfaction. I just feel down and worn out. I just want to lie in bed with my book and not face all the stuff I should be doing.

I have three main theories (I always have theories)....

First, as my husband put it matter-of-factly this morning, "It's CFIDS." Maybe my CFS is acting up, and I'm just not resting enough to get over it. That's a definite possibility.

Second, I am definitely feeling a bit overwhelmed with too much to do and no energy. This is a common problem for me. At the back of my mind,in a voice I'm trying not to listen to, I think I've committed to too much, especially with my writing. But it's all stuff I WANT to do, so I'm not admitting that it's just too much.

Third, I almost certainly am feeling some anxiety about the coming week. We're heading up to NY to meet my family for a camping weekend. The preparation for this kind of a trip is always enough to potentially cause a crash, so that's part of it. But I'm also worried about the trip itself. I love my family and enjoy being with them, but - as I'm sure you all understand - spending several days with other people is always exhausting, no matter how much you love them. And my family is not exactly the easy-going type. They like to pack as much fun into every day as they possibly can. So, it promises to be a very energetic weekend, with lots of activity, complicated meal prep, noise, late nights, etc. No one can make me laugh like my family and I'm sure I'll have fun, but I know it will be challenging to keep up with them. Also, we'll be close to my hometown of Rochester, where dozens of other-side-of-the-family members live, so I feel pressure to try to fit in visits with as many of them as I can, too...or, at the very least, with my dad and my grandmother.

So, in all likelihood, I'm feeling so run-down from a combination of all three things. Ken says I should just take a day off, and it seems like that's what I'm doing today - not by plan but just because I can't find the energy to do much of anything! I can hardly keep my eyes open, so I'm going to grab a quick lunch and go take my nap. Thanks for listening.

Friday, August 07, 2009

Just a quick update to let you know that the CFS genetic study that I wrote about earlier this week is still actively recruiting participants and all of the information I posted earlier is correct. One person had trouble when she called, but I have double-checked with the research assistant, and she has no idea why that was. In any case, the phone number and e-mail posted earlier are correct, and they need more participants. If you have any trouble with that contact information, you can also try e-mailing Caitlin Smith at cksmith@uic.edu. She's the research assistant for the study and also the person who answers the phone.

Thursday, August 06, 2009

The boys and I spent this morning at the pediatrician's office for their annual check-ups. As always, I was impressed by and hugely grateful for their wonderful doctor, who has helped them immensely and spent a lot of time learning about CFS since they were both diagnosed. She's kind of becoming our local pediatric expert on CFS - I've referred several parents to her.

Craig (age 11) is doing great, as I've mentioned here before. His CFS symptoms began in 1st grade - mainly intermittent back pain, chest pain, headaches, sore throats, and exhaustion - but have always been much milder than either mine or Jamie's. At his worst (before treatment), Craig missed 45 days of school in 3rd grade. At that point, we decided it was time to officially diagnose him and start treatment.

He now takes o.15 mg Florinef (one and half tablets a day) for Orthostatic Intolerance (OI), and is completely symptom-free about 90% of the time! It's really amazing. He also takes potassium supplements, salt tablets, and daily Gatorade to help the Florinef work. This past school year, Craig missed only 12 days!! That's extraordinary for a kid with CFS, and we're so grateful. He also had trouble with recurrent sinus infections (6-7 per year) - probably made worse by CFS - but he had his adenoids out 2 years ago and has had only 1 sinus infection since then, despite having severe allergies in spring and fall. He's incredibly healthy now and able to do just about anything he wants.

Jamie's (age 15) CFS has always been more severe. His began after a bout of Lyme disease in 3rd grade, then he had a full year with no symptoms at all, and his symptoms returned and became much more severe in 5th grade. Jamie missed 60 days of school that year. The following year - his first at middle school - Jamie was so ill that we didn't even count days' absent. The school counselor got him a district attendance waiver, waived all electives, and arranged for a home tutor for two classes. For the other 3 classes, I drove him back and forth to school whenever he was up to attending; he made it to those classes about 60-70% of the time.

Finally, at the end of sixth grade, after seeing Dr. Bell and consulting with Dr. Rowe, we learned all about OI and started Jamie on Florinef. There was no effect at first, until he got up to a dose of 0.2 mg per day. Then, it was like someone had flipped a switch - he went back to school full-time, rejoined band, and was even back to playing soccer.

At the end of 7th grade, Jamie got Lyme disease again (fortunately again caught immediately). After treatment, his Lyme symptoms were gone but his stamina was a bit lower. Lyme is a known trigger for CFS, so this makes sense. He was treated again for Lyme, just to be sure it was all gone, with no effect. In the two years' since then, Jamie has been able to continue full-time school, but he has plenty of down days, averaging about 25-30 missed school days a year and feeling severely crashed anywhere from 1 to 5 days each month. Last summer, Dr. Rowe advised our doctor to increase Jamie's Florinef dose to 0.3 mg, and that helped a bit.

So, that's where Jamie is now. We talked to his doctor today about various possibilities to increase his stamina. He's been coping well during the summer, but it's difficult during the school year, especially to make up missed work after a week or more out (he's in high school now). His pediatrician is going to consult with Dr. Rowe again about 3 possible approaches: increase Florinef dose again, add Midodrine (another common OI treatment), or try a stimulating medication during the day (our doctor said she's used Ritalin-type drugs for some kids/teens with CFS with success - studies show these drugs increase blood flow to the brain, so they should help with CFS/OI). So, we'll see.

That's about it, I guess. I thought some of you might be interested in the history and status of our boys' CFS. We are enormously grateful that they are both functioning as well as they are - we know we are very fortunate, compared to other families with CFS. Let me know if you have any other questions about pediatric CFS.

Tuesday, August 04, 2009

My older son, Jamie, and I are participating in a new research study that aims to identify some of the genetic markers associated with CFS. This is exciting stuff! It's a large-scale study through University of Illinois at Chicago that will look at genetic markers in people with CFS related to EBV and HHV-6 infections. Best of all, anyone over the age of 13 can participate from anywhere in the U.S.

All that's required is filling out some forms, taking part in a short phone interview, and submitting blood for analysis. You don't even need to leave your house - they'll send a visiting nurse to take the blood sample. And you'll be paid a small stipend for your participation.

It's a great opportunity to help move CFS research along - real, solid research based in hard science that could help lead to tests or treatments. I like to participate in studies whenever I can. It helps to remove that helpless feeling and makes me feel like I can make a difference.

If you're interested in joining Jamie and I in this study, contact Dr. Taylor at UIC at mono@uic.edu or call the research assistant at 312-339-5257.

P.S. In contrast, another totally useless CFS study was published recently. The result? Supposedly, kids with CFS have parents who have higher academic expectations than other kids; therefore, high parental expectations put a child at greater risk for CFS. HUH?? There were only about a dozen kids in the study. My husband was ticked off when he heard about this one. He said, "What kind of scientist doesn't understand that finding a correlation between two things doesn't necessarily indicate a cause and effect?" What a waste of our limited CFS research money.

Monday, August 03, 2009

The boys and I made it back home by 1 pm on Friday, just before a huge storm hit (good timing!). I actually enjoyed the storm because it felt so good to have all four of us back together in our cozy house (Ken decided to work from home Friday). The boys had been up past midnight two nights in a row and were pretty worn out. Craig napped in the car and was fine by the time we got home. Jamie couldn't put his book down (as usual!) and was totally wiped out Friday afternoon, so he just relaxed on the couch under his quilt and was much better by Saturday.

I made a conscious effort to spend some fun time with the kids this weekend and not focus too much on the to-do list, and we had a really nice weekend together - lots of games, great meals, DVDs, capped off by mini golf Sunday evening and ice cream at our amazing local dairy. Very nice and rejuvenating.

But now it's Monday morning - back to work! I'm helping the boys clear out their rooms a bit (I live in a house filled with packrats). We're starting on the closets this morning - yikes!

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.